I was diagnosed with Alport Syndrome when I was eighteen months old. It’s a rare genetic kidney disease that causes kidney failure, hearing loss and eye abnormalities. I wear hearing aids, had lens replacement surgery when I was eighteen, but have ongoing problems with my macula (central vision) and currently there is no cure.
Living with a rare kidney disease can feel very isolating, not knowing anyone outside of my own family who might be dealing with something similar. I know there’s a fine line between complaining and sharing life’s challenges, but I want to express the importance of future research and support for renal patients. It’s too easy to feel bitter inside and resent people for not understanding, so if shouting about my battles can bring positivity to others, I guess that can only be a good thing?!
This story isn’t ALL doom and gloom, I promise!
I’ve hit some pretty low points in my life. During my first year of university, I sank so low I wanted to either hurt myself or hurt anyone who came near me! And at the time I had no idea why, I was in a hole and I couldn’t get out… Not very easily anyway. The weirdest thing is, it can happen when everything is going just fine! I had a great job working as a Student Brand Manager for Red Bull, I was on the committee for the Solent Shredders ski and snowboard club, which I loved, I was challenging myself and learning everything I could about T.V and video production… and succeeding at it. Even with lots of positivity in your life, sometimes nothing can stop the dark cloud that consumes you when you enter the tunnel of negativity. Looking back now, I know that it was caused by loneliness. I felt like I was the only person alive with Alport Syndrome. I resented everyone around me for being so young, naive and carefree, but I didn’t even try to tell anyone about it. I was disconnected, struggling to adapt to educational life, having spent 6 years in the ‘real world’, and I even found myself resenting people for not having anything wrong with them!
There was a bitterness bubbling away inside of me that I couldn’t seem to get rid of.
I don’t expect many people to understand what’s going on inside my head because of my kidney disease, but now and again I just feel like I need someone to ask more, show me that they’re trying to understand and show some empathy. I’ll never be too embarrassed to talk about it… not any more. Accepting what I have to live with has been the hardest thing for me. It often makes me wonder what I could achieve if I didn’t let it get in the way, but I have no choice sometimes… with all the blood tests, hearing tests, urine samples, eye surgery, hearing aid repairs, medication… more problems with my eyes, better go back to find out what’s happening now… what’s next? Hurdle after hurdle and the thing is, it’s never going to settle.
Alport Syndrome has left me emotionally paralysed on two occasions in the past.
I don’t categorise them as breakdowns, I prefer to call them ‘wobblies’, because I managed to avoid taking medication to fix myself… which I am by no means against by the way, I’m an advocate for taking medication if it prevents someone from losing their true identity!
I know exactly why my wobblies happened. I became lonely and stopped sharing the real me. I shut the door, bottled up my emotions and isolated myself. I put my mask on and refused to take it off because I thought it would make me weak. I’d convinced myself that I shouldn’t talk about my situation, and that no-one would understand anyway! But on both occasions, I eventually found the way out through staying active, finding positivity in my life and talking about the problems I’d created in my head, as well as the challenges to come.
When I was at school, I told myself that we have two choices in life…
to live in fear or to live for the moment. I’ve carried that mentality with me for many years. Now, with more life experience, I understand that it doesn’t have to be one or the other. Instead, if we acknowledge our fears, we can utilise them to motivate ourselves to live for the moment.
When I manage to leave the negativity where it should be and look at everything I’ve got… I’m grateful to have all my limbs, I can still see and hear, an incredible family who support me, friends that would offer one of their kidneys without question, hobbies that make me feel alive, a job that takes me all over the world, skills that will stay with me forever and the ability to do most things I put my mind to. It’s definitely not all bad!
Extreme sports and adventures are my saviour.
The natural progression in sports, and the psychology behind why I feel the need to push myself more and more fascinates me. It’s absolutely vital for me to spend time chucking myself out of a plane, cruising through some silky powder on my snowboard or tearing through the trails on my mountain bike. Even when it all goes wrong and I smash myself up, I will always go back to that sport, till the next time I smash myself up! It’s a temporary fix where I feel totally in control of my destiny, and if I mess up, I’ve only got myself to blame. It’s the only time I can test myself while doing something I 100% truly love.
As for travel and adventures… I think being outdoors and exploring is one of the best ways for anyone to recharge their batteries. Escaping the stresses of ‘normal’ life and all the trappings that come with it is so important to me. Holidays are OK, if that works for you and resets your computer then great! I just find that throwing myself into the unknown and seeing where I end up is the only way I can learn about myself.
I try to look at my life in a positive light as often as I can, because I really am happy to be alive. Hopefully during any rough times ahead, I can put the reasons why i’m feeling grotty into perspective and cut the dark times short before it gets dangerous again. I somehow manage to make myself forget that Alport Syndrome comes with 3 separate health-related challenges sometimes. It’s about keeping busy and having a goal in mind that keeps me distracted. I aim to continue to share my story, adventures and progress and hopefully connect with others who have the same lust for life!
This is my way of taking ownership of this kidney disease.
Since 2017, I’ve been a lot more open about living with Alport Syndrome. I find talking about it really helps control the anxieties of kidney failure. However, there has to be a balance between speaking out about it and not letting it define who I am. I’ve never spoken to any of my employers about it before now. I’ve always believed that having a health issue isn’t good for business and it scared me into hiding and pretending nothing was wrong with me. If anyone asked why I’ve got hearing aids I would just say, “It runs in the family.” I’ve never liked shoving problems under the rug, but I thought it was inappropriate to talk about health related issues in the workplace. It used to make me feel vulnerable. I’ve learnt that I can be accepted for who I am, as long as I show willingness and work hard.
I want to reach out to anyone struggling with hearing loss, eyesight problems and kidney disease so that together we can prove that negativity will never get the better of us!